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Immune Dysfunction — Part 1
A layperson’s report on a disturbing medical syndrome.
BY
NANCY
R.
WALSETH,
J. D.
othing is more fascinating to ponder
than the incredibly complex human
immune system. This multi-organ
network performs innumerable daily mira
cles in all of us, apparently a very hardy
and usually unproblemmatic system. Yet,
aside from the occasional bubble baby
story, or perhaps a seasonal ho-hum report
on hay fever and the efficacy of allergy
shots, the immune system did not get
much press prior to the outbreak of AIDS
in the United States.
AIDS has catapulted the immune
system from relative public obscurity into
media stardom. Science writers and public
television producers have raced to trans
late what little is understood about it into
plain English. Over and over, we have
heard about antigens, antibodies, B
lymphocytes, helper T cells, and memory
T cells, and their respective specific, time-
critical functions. How those cells know
what to do, and when to do it, is yet
unknown, but we do know that the cells
and substances which comprise our
immune system do certain amazing things,
somehow, to keep us alive despite a life
long onslaught of malevolent foreign in
vaders (e.g., bacteria and viruses) and en
vironmental toxins.
The big research breakthrough on
AIDS, of course, was the isolation of the
specific viral agent, HIV, which causes
and spreads the disease. Now, the search
for a vaccine and cure progresses slowly
! hampered by the larger mystery, the
Byzantine puzzle — the workings of the
immune system itself, which cannot be
dissected and preserved in a jar or readily
observed in action.
But AIDS, though undeniably the worst,
is only one of several relatively new and
I alarming immune-dysfunction syndromes,
j Ironically, early AIDS research yielded an
important ancillary discovery which finally
provided a name for one of these other
severely debilitating, but apparently not
fatal, immunologic illnesses: Chronic
Epstein-Barr virus (CEBV) syndrome.
This insidious, perplexing illness had
been observed by doctors for several de
cades, wth patients presenting a complex
of chronic symptoms including debilitat
ing fatigue, achiness, fever, sore throat
and sometimes swollen glands. Their
primary complaint was not the severity,
but rather, the chronicity of their symp
toms; they simply did not get well. They
were diagnosed as having everything from
the flu to multiple sclerosis, and suspected
of being hypochondriac, psychosomatic or
simply depressed.
A review of the literature reveals that
the appellation “ chronic Epstein-Barr
virus syndrome” is actually more a theory
than a diagnosis, and that the “ discovery”
of the Epstein-Barr connection has not
stilled, but rather has fueled, a raging con
troversy among researchers as to the role
of this virus in the development of this
chronic illness. Further, as is true of AIDS
research, our lack of understanding of the
immune system itself hampers all CEBV
research. Most of the data, except for
blood test results, seems to be anecdotal
rather than clinical.
CEBV syndrome is not contagious; in
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fact, one’s initial contact with the virus
seems to be almost irrelevant. Researchers
agree that by the age of thirty, 90 percent
of us have already experienced (and our
immune systems have successfully dealt
with) a primary Epstein-Barr infection,
which can manifest either in childhood as a
simple cold, or in adolescence or adult
hood as infectious mononucleosis. Mono
can last from a few weeks to a few months,
and is marked by symptoms of extreme
fatigue, swollen glands, sore throat, fever,
headache, and some degree of malaise
(mental debilitation).
During the time the virus is actively
replicating in your cells, you carry it in
your throat, your saliva and your sinus
cavity, and can pass it to another person by
an exchange of saliva (kissing), or by a
well-directed sneeze. After the virus has
stopped replicating due to the defensive
work of your immune system, it remains
forever in some of your B lymphocytes but
is considered “ inactive,” or dormant.
(During this time, you probably cannot
pass the virus to others, but there is some
disagreement on this.) Since 90 percent of
us already have it, concern over the spread
of the virus is almost moot, overshadowed
by the question of why most immune sys
tems can fight the Epstein-Barr virus into
submission, while some apparently cannot.
Researchers tackling this question seem
to disagree on everything, including
whether the Epstein-Barr virus bears any
causal relation at all to the syndrome now
named after it, as opposed to a different
kind of co-relation.
Those accepting the theory that the
symptoms are caused by the Epstein-Barr
virus make the CEBV diagnosis on the
basis of levels of certain antibodies pro
duced by the body in response to the virus.
“ Late antibody titers” above a certain
level are considered diagnostic of CEBV
in patients who have been sick for over two
years. CEBV skeptics, however, point out
that although these high late antibody titers
are often found in persons suffering from
chronic fatigue, they also have been found
in healthy persons.
Related credibility battles are waged in
the literature between doctors who apply
the CEBV diagnosis only to patients who
never recovered from their initial Epstein-
Barr infection, and doctors who also apply
the diagnosis to patients who recovered
from mono years ago and then experienced
a seeming recurrence of the disease.
Doctors in the latter group ascribe to the
theory that a re-activation of the long-
inactive Epstein-Barr virus has occurred in
the lymphocytes. Yet, at least one
researcher has flatly said in a 1986 paper
that the Epstein-Barr virus is incapable of
such a reactivation and that those patients
who seem to be suffering from a recurrence
rather than a primary infection should be
evaluated for other possible causes of their
symptoms. In other words, CEBV may be
a copout diagnosis in some cases.
At any rate, we know that the ubiqui
tous Epstein-Barr virus is not the sole
cause of CEBV syndrome; if it were,
90 percent of us would be sick. Some
genetic and environmental coincidences
among these chronically ill people have
been noted in the literature, but apparently
not explored very deeply. They seem
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potentially tremendously important, espe
cially in view of the controversy over the
basic diagnosis. In terms of prevention,
they may be more important than the virus
itself.
NEXT MONTH, Part 2 of this article
will present the stories of some local vic
tims of CEBV and Environmental Illness,
and will suggest that several diverse clues
— genetic predisposition (allergies),
environmentally toxic manmade products,
and the new field of psychoneuro
immunology — should be more seriously
considered and discussed by those
attempting to understand and convey to the
public what these puzzling diseases may
be trying to tell us about the way we live,
and perhaps even about the way we think!
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